Summertime Blues

"...ain't no cure for the Summertime Blues....."

Having finished up my structured regime of going to the private physio clinic to get some stretches, massages, and most importantly some walking, my motivation seems to have dissolved like winter's melting snows.

As the house is too small, the backyard non-existent, the driveway too short and the sidewalk too uneven, my plan was to find some un-congested community locale to take a short daily stroll. A community center, a paved parkland trail, a quiet corner of a parking mall - an unhurried walk with my wife following with the manual chair for support. But the days seem to come and go, slipping away along with my motivation.

Always having been self reliant, I find it difficult to ask anyone, my wife included, for help. Ask I have but I never "push" the topic. Willing to assist, she is, however, knowing is more comfortable in the confines of her home, I hesitate to inconvenience her.....and so I sit.

Four years on and where I have I come? I'm no longer dressed by my wife, hoisted out of bed by a lift and sent off to physiotherapy but rather, I get up dressed and step out into my wheelchair to head off to work - most often before my wife awakes. Still, in those four years, each day, save perhaps a half hour, are spent sitting. If I measure progress by walking, which was my ultimate goal, I haven't progressed very far at all.

I've hit a major plateau. While the winter physio sessions did add some stability to my core, walking still is a challenge. Oh, I can stand up and cross a significant distance, moving with a fairly natural gait, however, it no longer seems to improve and doesn't feel easier. I had hoped that with each week of dedicated effort, each foot would step out in ease, land with assurance and be repeated with ever increacing strength and grace. Yet, with each passing month one foot follows the other, trying not to twist, stumble or fall - I find time marches on while I do not.

My impression is that "minor" muscles no longer tighten, clench or work in concert to provide a rigid platform for my torso to sit upon. I waver, front to back, unable to remain taut without significant consciousness and effort. My knees easily support me yet if feels at times that they still want to hyper-extend - bending in ways they aren't designed to do. Feels that the femur wants to slide over the kneecap and past the tibia as it aims for the floor.

That unnerving physical sensation translates into a mental uneasiness. In the four years post injury, I have never fallen down to polish the floor with my butt - not through board assisted transfers, not through braces, standing at the parallel bars nor walking with the walker - I have not fallen.....yet. However, that lack of tautness or regidity has me feeling that I might drift off to one side or another, front or back, to an unrecoverable degree. It fails to improve.

The mind plays significantly on my walking, perhaps even more than the physical ability. While it feels great to stand up and navigate the world from my height of old, I still step gingerly across the room aiming for my chair to sit back down.

I once described my mental impression of the sensation as "trying to stand a strand of cooked spaghetti on end". In my mind, I remain a strand of spaghetti, only now cooked al dente.

It has been said "a sign of insanity is to do the same thing over and over again expecting different results."

I have tried very hard with little further progress. Am I insane to keep trying?

* * *

At my employer's strong suggestion, I have taken a weeks holiday as I had far too many hours of vacation time accumulated.
With no place to go and nothing meaningful to do, here I sit - as 'there ain't no cure for the Summertime Blues'.

Spring-Summer Regime

Spring-Summer Regime

(Concluding "Physio Lite")

In a previous post entitled "Physio Lite" I outlined my plans for the winter of 2009-10. Due to hospital restructuring, the outpatient physiotherapy program at my hospital was terminated and those patients, like myself, were advised to find continuing physiotherapy in private community clinics. I chose the only clinic near my workplace accessible without without having book additional transportation

My reason for finding a clinic was two-fold. I wished to receive additional therapy to strengthen my core muscles in order to have better control and posture when standing upright. Secondly, as my home did not provide enough linear space in order to practice walking, I hoped to find a longer continuous space in which to walk while the winter snows prevented me from walking outside.

True to my expectations, the private physiotherapy clinic was not geared to treating patients with brain injuries, spinal cord injuries strokes or other major neurological tramas, but rather specialized in treating sports jocks and people with community acquired strains and sprains. That said, I found them to be quite professional and dedicated. The atmosphere and staff were welcoming and although the therapy sessions were a half hour each, I was never rushed and allowed to walk and use exercise equipment as long as I wished - usually dictated by by my scheduled ride home.
*(photo is of my physiotherapy clinic's gym. Gives some idea of the distance walked)

The half hour physiotherapy included a variety of stretches including hamstring, Achilles, and piriformis. I also recived further instructions on exercises I could do at home. Early in the new year of 2010, once a week massage therapy was added to the twice a week physiotherapy regime. Cost was paid for out of pocket but later reimbursed by my private insurance plan.

So what was accomplished in this half year of private physiotherapy?

• on the first day of therapy my physiotherapist performed a piriformis muscle stretch and the spasm that it generated almost threw her across the room. The spasms quickly subsided during subsequent visits & stretches however, after a winter of receiving the stretches, the increase in range and reduction of spasms has not translated into reduced sciatic pain. It continues as unpredictable and intense as ever. The links provided shows a technique in performing the stretch that differs from how I received mine. I lay prone on a table/bench while the physiotherapist braced with her hand around my hip while pulling my leg outwards like the handle on a slot machine.
  

Another link which which may be of use - YouTube Piriformis stretch.

• the range of my hamstrings is now about what would be considered normal, or pre-injury. The Achilles stretches were discontinued early on as the diminutive physio's physical effort was insufficient to be effective. (ie. I'm a big guy and she was a rather small young lady.) My own weight & repeated standing, whenever able during the day, was no doubt more effective than any force she could apply. Regardless, no matter how much I stretch the Achilles, I find that they tend to rebound to a tight state very quickly. The stretch doesn't last, perhaps due to the 'tone' I spoke of a few posts earlier. Early in January, I received another set of BoTox injections to the gastrocs and soleus muscles in hopes of reducing the tightness which prevents me from getting my heels down and not tilting backwards when standing. Although my physio thought she felt a slight amount of increased range right after injection, the amount she detected was minimal, nor did she feel the effects lasted very long. I felt very little change internally though after the effectiveness of the Botox wears off after about 3-4 months (due to the regrowth of the peripheral muscles targeted), I once again may have noticed a slight deterioration of my gait. (ie. walking was not as fluid and smooth). I now have to decide whether its worthwhile in getting future injections.

• laser therapy was applied to my hip and sciatic nerve area in hopes of lessening the pain however, in the end, I feel it had no effect, even temporary.
  

• Walking - core strength has improved which allows me to walk in an upright position and not lean heavily on the walker. In fact I can lift the walker off the ground while standing however I'm still unable shift weight to one leg while lifting the other foot, as in stepping, without the support of the walker. I don't have the measurements of the gym, however I graduated from walking the full length and back some 6 times when I first arrived to 25 to 30 times when I concluded last week. My stopping was due more to my time running out as my scheduled ride neared, than to fatigue. From full paralysis in 2006 to walking with a walker in 2010, I have yet to stumble and fall to the ground - a record I hope to keep.
  

• I used an apparatus where I could lift weights with my legs or switch the configuration to pull the weight downward with the hamstrings. This improved the muscle mass and strength in the hamstring muscles and quads. In the end I was doing about 50 repetitions of 100 pounds each session - twice a week.

• Massage therapy was started in January. Although advised by my BoTox physiatrist that it would be of little use and that I should save my money, I thought it was worth a shot anyways. During my post-injury recovery, my calf muscles have become rock-hard probably due to the tone - the very tightness which the BoTox had little effect on. More recently, I've noticed that my legs get very cold to the touch, especially at night (I don't feel cold, but the legs are noticeably cold to the touch). This again is probably due to the 'tone' - the brain telling muscles to clench which now constricts blood vessels and blood flow to the limbs (legs) affected. It appears that the doctor was correct as the legs remain very hard and tight even after my massage therapy coverage was exhausted. The massage was not restricted to my legs but also applied to stretching out and treating the lower back and piriformis muscles in an attempt to reduce the sciatic nerve pain. In the end I find myself undecided on the effectiveness. Some days post-massage I feel I have some relief, then again other days the pain that follows is as intense and as frequent as ever.

So, in summery, I did improve my walking, both in posture and endurance. Neurogenic nerve leg pain and sciatic nerve pain, however, remain and are as frequent and intense as ever. Both can be so intense that they make life very miserable 24/7 and are impossible to ignore.

The future? As I entitled this post, 'Spring & Summer Regime', it is now up to me to prepare a schedule and find a suitable location to practice walking and build on the endurance I gained at the physiotherapy clinic. With better weather, I can venture outside along sidewalks, in local parks or in shopping malls when crowds have dissipated. Structured physiotherapy provided the incentive to attend bi-weekly. Now it is up to me to find the discipline to continue walking on a daily basis. Wish me luck!

State of Affairs at Three Years Post Injury

So where have I gotten to three years post injury?

On some hazy day in April of 2006 I woke to discover my legs would not move. Major surgery weeks later after antibiotic therapy was initiated but seen not to be effective on it's own. Six Months over three different hospitals. Could not sit up at all - would flop over at the waist like a rag doll. Lifted from bed and chair with sling and hoist. No movement below lower chest, no pain (after initial surgical incisions) Catheterized. Left rehab hospital in about that state with only the slightest movement returning to my legs - which I decided not to share with hospital staff because of a disinterested if not negative attitude. Two doctors dryly stated that I would never walk again.

Returned home at the end of October of 2006 in about that state. Hospital bed in the living room, hoist, etc. Community health care sent me an in-home physiotherapist who assessed me and felt some flicker of movement stating "we can work with this". In January of 2007 I suddenly realized that I sat up with some abdominal control while reaching for something. As the inflammation continued to recede, the mobility slowly increased but the amount of neurgenic leg pain increased with it. The bad came along with the good. Post injury, through this period, I had massive spasms where one leg or the other would begin jerking uncontrollably, one or the other (never both at once, hmmmm?) and the would be violent and last sometimes for hours.
Started physiotherapy 4 times per week at my local community hospital (hospital number four). After a few months one gym session was replaced with pool therapy.
Got fed up with bowel treatments and catheter bags after the first year and got rid of them. Those functions have returned to near normal.

Continuing physiotherapy over the next few years, strengthening whatever muscles had returned under my command. During this time I was fitted for long braces (KAFO) which had a locking hinge at the knee. Put them on and wobbled in the parallel bars further strength and balance. Progressed to braces below the knee (AFO), with a limited hinge at the ankle. Each progression took about a year (a year from exercises on a mat to a sit-to-stand frame, another year to progress to walking with long braces, another year to walking with the short ankle braces, to now walking distances with braces and walker.)

Paralysis is only some 50% of the problem. The other major problem continues to be the intense and constant neurogenic leg pain (pins & needles/burning). The spinal nerves are permanently damaged and are continuously sending the signal that something is wrong and to stop it - only it can't be stopped.
Drugs have little or no effect on this particular type of pain.
Spasms have reduced to a few mild ones, usually late evening and not lasting for very long.

BoTox therapy could not be felt internally in any way but did improve my gait as the stride seemed to be longer and better controlled - that is, foot went right where I wished to place it rather than perhaps drift a bit or pull in to center. BoTox may have lost it's effectiveness about 3 weeks prior to my 4 month post-injection assessment and probable repeat injection.

In spite of the intense core exercises I still feel as if My middle is wrapped in a large Theraband (elastic band). Muscles are very tight and don't want to give at all. Doesn't hinder any motion or breathing but feels uncomfortable.

Muscular control has returned to much of my legs but the dorsiflection (lifting my foot off of the ground with heel in contact with the floor - or cannot tap my foot on the floor as I can push down but not pull up)

Post injury the muscles or back were altered such that I developed an intense sciatic nerve pain which manifested itself as an intense pain in the left seat/butt/hip joint area, making it hard to sit for any length of time. Turning on my side or back doesn't help much as even each pulse of circulating blood causes the spot to throb. The pain often manifests itself in the left heel at the same time. The most recent core exercises seem to have helped with this pain as it feels less intense, and occurs less frequently. Some days good, some not so much but can't correlate the change with 'post-exercise' fatigue, length of time sitting, weather, barometric pressure etc.

So in summery, I went from a catheterized rag-doll stuck in one position to now where I can turn to sleep in any position on my bed, dress myself and leave home for appointments without assistance. While my neurogenic leg pain remains intense and very distracting, other symptoms have improved immensly and I can walk with a fairly normal gait with the assistance of a walker. Distances are limited but are improving week to week. Transfering to a car or van is no problem as I can stand and swivel into the seat and lift my own legs into the car under their own muscle strength and control (no transfer board). Lyrica medication does not seem help the nerve pain much, if at all but one of the side effects is weight gain and I believe that side effect may be manifesting itself on me, which is problematic as I'm a big guy anyways.

So, I'm walking ever increacing distances but nerve pain remains the most distracting symptom.